CAP Chemo regime....

[Aliglen]

Chemo regime- CAP = cisplatin/doxorubicin/ cyclophphate

Hi there all, wondering if anyone can help....

Dianosed Stage 3 in 2007, had the following chemo:-

1. taxo/carbo 3 weekly x 6

2. taxo/ carbo 3 weekly x6

3.caelyx (doxil) 3 weekly x 6

4. cisplatin/ oral etoposide weely x 3 - stopped after dangerouly low blood counts!!

5. taxo/carol weekly x 6

6. just started cisplatin/ doxorubican/cyclophosphate

Had one clcle, been ill, neutrophinic, platetels none existent and just come out of hospital following pneumonia !!! felt terrible, just recovering and onc now saying he wants to continue with the same regime bit lower doses....my gut reaction is to refuse, feel cisplatin is certainly too much and what good is a much lower dose going to do ??

I have asked about Avastin, as many of you on this forum seem to have good results, but apparently it is not available for ovca in the UK ( so he says, unless fight with MPs etc which takes time.

I feel so confused and have an appointment with him tomorrow and dont want to be rushed into anything. Was wondering about insisting on a second opinion, but he says we need to start treatment again asap.

Sorry to ramble on, but am feeling desperate and could really do with some imput from someone I can trust . Thanks for any advice . Ali G

1 reply

[BusyLizzie]

Hi Ali,

I recently went for a second opinion and it can be a quick turn around. I decided 3pm one day to do it and was back from London with the input I needed 2 days later. Decide who you want to see (talk to ovacome or message me for what ovacome said to me) and then get your GP to arrange it. I have put the details in my blog 'Looking a gift horse in the mouth - 24 hours for a second opinion' as to how to go about getting a second opinion.

It is great to see 4 years on your oncologist is still routing for you!

Love Lizzie

X

[Aliglen in reply to BusyLizzie]

Thanks for your speedy response Lizzie, feeling better already...thought I'd go to Prof Martin Gore at Royal Marsden as there seems to have been good feedback about him... am just a bit wary of alienating my oncologist, he hasn't been too encouraging re 2nd opinion thus far. anyway will see how it goes tomorrow

All the best regards, Ali x

[BusyLizzie in reply to Aliglen]

Hi Ali,

Ovacome said to me, if it was your oncologists's wife or daughter they would probably be getting 4th and 5th opinions!

I don't believe people take it personally, I am sure they would rather have a patient convinced this is the right course of action rather than one who is half committed.

Love Lizzie

X

[FlorenceW]

Hi Ali

I'm being treated under Prof Gore at the Marsden, but the Senior Registrar I see is a Dr Jim Coward....he is amazing and has a PHD in Ovarian Cancer, but is off to Australia in March for his first Consultancy. I would really recommend you asked to see him.....he is involved in loads of research too. Also I read in the paper yesterday (albeit the Metro) that Avastin had been appoved for use here. So maybe worth following that up.

Good Wishes

Florence

[sarah1963]

Dear Ali

I feel for you. It is very difficult to be assertive when you are feeling poorly as you must be with your pneumonia. I had to really push myself into going elsewhere for advice.

My oncologist suggested a referral once I got to the stage you are at now in the hope that I could get on a trial (which I did). This is may be too late for today's appointment but you could say to your oncologist (to keep him on side) that you want to be referred to the Royal Marsden so that you can be considered for a drugs trial. Your GP will make the referral for you so there's no need to get permission from your oncologist. I almost saw Martin Gore but ended up seeing his colleague Prof Stan Kaye. I personally think that they are brilliant at the RM. The important thing is that you have the peace of mind of knowing that you have done everything you can and that the next step in treatment is definitely the right one.

Good luck!

Love Sarah

[Hidden]

Hi Aliglen,

It seems like you and I have a lot in common. I was 2007, and just finished 5th line. I have had something different everytime due to reactions of some kind or another. After the Cisplatin, (which affected my hands and feet again) I had Topotecan (advised for OC) and started off ok, but at the end stopped working and I had ascities and pheumonia. And just recently I have had gemcitabine/treosulphan which is not specifically for OC, but has taken my count down from 1965 to 23 after 9 sessions. I finished on 13/12, and am now waiting to see the onc at the end of the month to see what effect the break has had....... hopefully it will carry on a bit longer, but the last lot of drugs had more or less no side effects, so I would be happy to take it again if necessary.

I think a second opinion is always good if you are not happy with the treatment you are getting, so good luck. I hope they sort you out soon.

love n hugs

Viv

[Aliglen]

Hi Viv, thanks for imput and so pleased to hear that your count is down, long may it continue.

am nervous about seeing onc this pm, but have decided that i'm going to ask for a 2nd opinion re the next treatment...

love to you also, Ali x

[BusyLizzie in reply to Aliglen]

Don't be nervous, Ali. I am sure he wants the best for you too.

Love Lizzie

X

[nandi]

Hi Ali. I dont have anything to add to the excellent advice everyone has already given you. Just want to wish you luck. I took Lizzies advice and asked my GP today about a second opinion on maintenance and not offending my Onc. She was great and said mention it to the Onc. whoshould not be offended and might even refur you herself. Otherwise my GP said she would be happy to.

All the best, Dorothy x

[Aliglen]

Hello everybody, just to let you know that my appt with my onc went well and he agreed to send me to the Royal Marsden for another opinion. he did say that he wouldn't be happy if they came up with some "crazy and experimental " idea, and feels that as the 1st treatment of CAP HAS reduced ca125, i'll probably be as well to go for a lower dose of thew same and save the other stuff for later. Anyway I do feel a lot better , having taken some control so we''ll see what transpires.

He did also say that the recent news re Avastin does not mean we can just have it here in the UK...its a finance thing within each NHS trust ???

Thanks again everyone for your responses. Love to all , Ali